Autodidact: (n) a self-taught person. Poet: (n) a person who writes poetry.
Autodidactpoet: (n) A blog full of thoughts from a self-taught writer.

Sunday, September 15, 2013

Have you heard?

In your perusal of news the past week or so, you may have seen the name
Issy Stapleton come up. Or maybe you
didn't. I didn't, actually, in my
typical news readings. News of this came
through other means. I'd be interested
to know if you've heard about this.

*Warning: this issue really makes my heart hurt. I do not apologize for any emotional reaction
you may have to what I write, but I do hope that it makes sense.*

Issy Stapleton is a 14 year old young woman from Michigan who is
currently hospitalized due to carbon monoxide poisoning. Her mother allegedly attempted to kill her
and herself in the family's van. Both of
them survived, and her mother is being held without bond. Issy is in the hospital, making slow gains
towards health, but will likely suffer lasting brain damage. This story by itself is horrific, is it not? What are your thoughts about Issy at this
point? (Probably something along the
lines of how terrible this is, and what a tragedy it is, and how could
something like this happen, right?) What
are your thoughts about Mrs. Stapleton?
(Probably something along the lines of being glad she is going to be
punished, wondering about some sort of mental illness, wondering how a mother
could ever do such a thing to a child).

Now here is the last piece of information. The piece of information that all the
articles I read put as the very first thing:
Issy Stapleton is a young woman diagnosed with autism.

For some reason, that fact changes everything. Does it for you? Did you hear yourself say,
"oooooooh," as if that provided an explanation? Did you start to ease up on your thoughts
about Mrs. Stapleton? Did you wonder
what sorts of behaviors Issy might exhibit, and did you start thinking about
the stress of raising a young adult with special needs?

Maybe you did, and maybe you didn't...but if you did, think about
why. What is it, exactly, that changes
the act of a mother attempting to murder her teenage daughter when you hear
that the daughter has a disability?

From what I understand, Issy did demonstrate challenging behaviors,
much like many of the children and young adults I work with and love. Challenging behaviors are just that...they're
challenging. And they can be awful, and
stressful, and dangerous, and they can seem unrelenting. They're painful and destructive, and when
they're occurring, challenging behaviors can make life a living hell. I'm not kidding. I'm not exaggerating. And I'm not even a parent. To deal with these behaviors 24 hours a day,
to fight with service providers, and schools, and try to find something that's
going to work, and to have your family live in fear of one of your children is
awful. I see it. I hear it.
To the extent that I am able, I get it.
I've had black eyes, sprained wrists, bites, bruises, and chunks of hair
pulled out, and I've got the scars to prove it.
I see the look in parents eyes when they feel they have reached the end
of their rope. I feel it in my body when
they come into my office and their bodies are heavy with exhaustion and
depression and anxiety and straight up hopelessness regarding their children's
behaviors.

But the thing about challenging behaviors is that they are just
that...they're behaviors. Each of us is
made up of so much more than our behaviors.
Underneath of all of our behaviors is our humanity, our self, our
personhood, our soul, whatever you want to or choose to call it. When a person can't see that piece of another
person, it is nobody's failure but their own.
It is not my place to judge or condemn Mrs. Stapleton, and I can't
pretend that I know what was going on for her and her family anymore than the
picture that the brief news articles have shown. (Further, I can only assume there must have been significant, significant factors that we are unaware of that pushed her to see this as her only/best option. This is not meant to be an attack or a judgment on her, but on the rest of us. We don't know what the factors were for Mrs. Stapleton. We're making assumptions. This post is about those assumptions. It's about the rest of us). But, if we're going to blame Mrs. Stapleton's
actions on Issy's diagnosis and on her behaviors, I think we need to take a
look at the other side of the coin as well.
I can't imagine being able to see the humanity/self/personhood of
another person and still imagine taking their life. Is this what was missing for her? Had she reached a point where she was unable
to see beyond the behaviors?

Beyond that, autism is not a tumor. It is not a thing that grew that changed a
person's life. In a social story I wrote
for a child recently explaining his diagnosis to him, I wrote, "autism is
just another way of thinking." It
is another way of being in the world. It
is not wrong, I explained to him. It
does not make him better or worse than other kids. It's another way of thinking. Autism is another way of being. There is an essay written by Jim Sinclair, a
man with autism, entitled "Don't Mourn for Us" in which he writes: "It is not possible to separate the person from the autism. Therefore,
when parents say, 'I wish my child did not have autism,' what they're really
saying is, 'I wish the autistic child I have did not exist, and I had a
different (non-autistic) child instead...' This is what we hear when you mourn
over our existence. This is what we hear when you pray for a cure. This is what
we know, when you tell us of your fondest hopes and dreams for us: that your
greatest wish is that one day we will cease to be, and strangers you can love
will move in behind our faces."
(Read the whole essay here). For her to attempt to kill her
daughter because of her autism is for her to attempt to kill her daughter for
who she is. In other words, it means
that she did exactly what her behavior indicates that she did: she attempted to kill her daughter. Why are there any shades of gray here?

The news articles consistently cite Issy's diagnosis and her behaviors
as the trigger for Mrs. Stapleton's actions.
"Caregiver fatigue" and "extreme stress" and
"isolation" and "depression" are all terms thrown around
behind the disclaimer that it is "too early" to determine her
motive. But let's stop for a moment and
think: if this was a mother of a child without a disability, would we be
looking for these excuses? What if she
was the parent of a child with a terminal illness?
Would we be citing any of these things as reasons or excuses? Would we still be grabbing at these
explanations?

Mr. Stapleton is quoted in several articles I read as saying that Issy's
mother likely thought that she was "doing Isabelle and everybody around
her a favor." Perhaps--perhaps--this
really was Mrs. Stapleton's thought. And
perhaps--perhaps--this is really what she believed. If this is the case, though, let us see this
as a reflection on Mrs. Stapleton's mental status at the time. If this is the case, let us see it as a
tragedy that she was unable to recognize and access the support that she
needed.

This quote, however, sounds dangerously like the idea that people with
disabilities are better off dead. The
fact that people will hear this and be able to swallow it and that it will evoke
some sort of compassion in their hearts lets me know that the lives of people
with disabilities are not valued in the same way as the lives of people without
disabilities. Saying that a mother
attempted to murder her daughter as a potential favor for the lives of everyone around them is saying that Issy's
life was a burden for the people surrounding her. It is saying that, because of that burden,
Issy is not deserving of the right to life the rest of us accept and live and
offer to others without question. Do you
see what a short road it is when following this logic? This statement, which will elicit compassion, is dangerous. It is dangerous, and it is wrong. I don't have words for the anger this stirs
inside me. Are you angry?

The other issue cited as potentially a contributing factor to Mrs.
Stapleton's decision was her difficulty obtaining services and funding for
necessary and appropriate services.
Again, I get it. The whole system
is broken, and kids who need services don't get them or can't afford them,
insurance only covers some treatment or the wrong treatment or evaluations
only, schools don't know what to do, or can't do what they're supposed to do,
or sell you a bag of goods and don't do what they're supposed to do at
all. I get it. It's an endless, exhausting struggle full of
red tape and dead ends.

But when do we ever say that an alcoholic man abused his wife in a
drunken rage because he couldn't get into a treatment facility, or couldn't
afford quality drug and alcohol treatment?
When do we say that a parent sexually abused a child because he was a
stressed out parent who couldn't find a decent babysitter? When do we say that a mother abused or
neglected her child because social
services is just spread too thin and couldn't help her out? Even in the example of rape, where there is
victim blaming galore and much more focus on the victim than on the
perpetrator, would we ever consider that the extenuating stressful
circumstances of the rapists life should have any bearing on the crime? On what his punishment should be? If we don't consider lack of services and
support in these situations, why is it relevant here? If we don't consider extenuating life
circumstances in other situations, why are they relevant here? Why is it that, in this case, the "extenuating
life circumstance" can also be the victim?
How is it possible to lose sight of the fact in all of this that what we
are looking at is the attempted murder of a 14 year old girl?

Although an entirely different situation, you remember that I wrote about Ethan several weeks ago. His
family continues to wait for answers, and continues to be denied an independent
investigation. When lives aren't valued,
there are often extreme, painful, and terrible consequences. The stories about Ethan and Issy are just two
of these stories. I'm not into playing
Oppression Olympics, and I don't think that benefits anyone. I will say, however, that I think it's
important to acknowledge that in discussions of oppression, in discussions about
the "isms," and in discussions about violence and systemic and societal problems, stories
like this often don't even come to the table.
People with disabilities (particularly developmental disabilities) don't
often come onto the radar. We need
allies to give voice to these issues. We need to listen to self-advocates. We
can do better. We have a long way to go,
but we simply have to learn to do better.

2 comments:

Thank you for this article. Your thoughts on this matter mirror my own in so many ways. You put into words ideas that I am glad are being shared.

As a spouse to someone with Bipolar Disorder I understand and I too am angry. The idea that a life lived differently - with different thoughts and ways of perceiving, with different struggles and gifts - is less valuable or is better off dead is horribly damaging to humanity as a whole, and can be devastatingly damaging to the person that it is applied to.

I appreciate your words and shared thoughts on this matter. "We can do better." And this is one way of making that happen.

Thanks so much for your comment, Rachael. I am glad that this resonated with you. And you're right -- mental illness is often treated in the same way, and I agree that this way of thinking is damaging to humanity in general. We owe all of our fellow humans so much more.

About Me

"My continuing passion is to part a curtain,
that invisible shadow that falls between people,
the veil of indifference to each other's presence,
each other's wonder, each other's human plight."
Eudora Welty